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  • 1.
    Gusdal, Annelie K
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Family caregiving for persons with heart failure: Perspectives of family caregivers, persons with heart failure and registered nurses2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Heart failure is a growing public health problem associated with significant morbidity and mortality. Family support positively affects outcomes for the person with heart failure while also leading to caregiver burden. Registered nurses have a key role in supporting and meeting the needs of family caregivers.

    The overall aim was to explore the situation and needs of family caregivers to a person with heart failure, and explore requisites and ways of supporting and involving family caregivers in heart failure nursing care.

    Two interview studies, one web survey study and one intervention study were conducted between 2012 and 2017. A total of 22 family caregivers, eight persons with heart failure and 331 registered nurses participated in the studies.

    Family caregivers' daily life was characterized by worry, uncertainty and relational incongruence but salutogenic behaviours restored new strength and motivation to care. Family caregivers experienced that their caregiving was taken for granted by health care professionals. Family caregivers expressed a need for a permanent health care contact and more involvement in the planning and implementation of their near one’s health care together with health care professionals. Registered nurses acknowledged family caregivers’ burden, lack of knowledge and relational incongruence. A registered nurse was suggested as a permanent health care contact to improve continuity and security. Registered nurses neither acknowledged family caregivers as a resource nor their need for involvement. Registered nurses working in primary health care centres, in nurse-led heart failure clinics, with district nurse specialization, with education in cardiac nursing care held the most supportive attitudes toward family involvement in heart failure nursing care. Family health conversations via telephone in nurse-led heart failure clinics were found to successfully support and involve families. The conversations enhanced nurse-family relationship and relations within the family. They also provided registered nurses with new, relevant knowledge and understanding about the family as a whole. Family health conversations via telephone were feasible to both families and registered nurses, although fewer and shorter conversations were preferred by registered nurses.

    This thesis highlights the divergence between family caregivers’ experiences and needs, and registered nurses’ perceptions about family caregivers’ situation and attitudes toward the importance of family involvement. It adds to the knowledge on the importance to acknowledge family caregivers as a resource and to support and involve them in heart failure nursing care. One feasible and successful way is to conduct Family health conversations via telephone in nurse-led heart failure clinics.

  • 2.
    Gusdal, Annelie K
    et al.
    Nursing Care RandD Unit, Centre for Public Health, Huddinge, Sweden.
    Beckman, Christel
    Nursing Care RandD Unit, Centre for Public Health, Huddinge, Sweden.
    Wahlström, Rolf
    Department of Public Health Sciences, Division of Global Health (IHCAR), Stockholm, Sweden.
    Törnkvist, Lena
    Nursing Care RandD Unit, Centre for Public Health, Huddinge, Sweden.
    District nurses' use for an assessment tool in their daily work with elderly patients' medication management2011In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 39, no 4, p. 354-360, article id 21273229Article in journal (Refereed)
    Abstract [en]

    Aim: To explore the capability of the Safe Medication Assessment (SMA) tool in identifying factors highly related to unsafe medication management among elderly patients and to investigate the district nurses' (DNs) opinions of the SMA's usefulness as a tool in their daily primary healthcare practice. Introduction: Elderly patients who experience many medical conditions often use multiple drugs. As well as the combined decline in physical and cognitive functions, the elderly are at high risk for medication-related problems. It is essential to develop a screening procedure to distinguish elderly at risk of an unsafe medication management. Methods: An explorative study. During a 3-6-month period, 25 voluntary DNs used SMA with 160 patients (consecutively chosen and meeting four specified criteria) in their daily practice. Furthermore, DNs responded to questions regarding SMA's usefulness. Results: The result showed that SMA had the capability to identify factors highly related to unsafe medication management among the elderly included in the study. In 64% of assessments DNs identified areas of new information and in 23% of the assessments DNs intervened. They found SMA to be satisfactory regarding its level of simplicity, relevance, completeness, intelligibility, and time for implementation. Conclusions: SMA alerted the DNs to patients' attitudes about medication and empowered them in identifying elderly patients who had unsafe medication management. SMA was also perceived as a useful assessment tool by the DNs.

  • 3.
    Gusdal, Annelie K
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Josefsson, Karin
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare Department of Caring Science.
    Thors Adolfsson, Eva
    Västmanland County Hospital, Department of Primary Health Care, Västerås, Sweden.
    Martin, Lene
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Family Health Conversations Conductedby Telephone in Heart Failure Nursing Care: A Feasibility Study2018In: SAGE Open Nursing, Vol. 4, p. 1-13Article in journal (Refereed)
    Abstract [en]

    Registered nurses (RNs) in heart failure (HF) nursing care have a key role in providing family support, which positively affectsthe outcome for the patient. Telephone interventions conducted by RNs have been reported to be successful in HF nursingcare, but Family Health Conversations (FamHCs) involving the patient and the family, have not previously been tested. Thepurpose of the current study was to explore the experiences and feasibility of nurse-led FamHCs conducted by telephonewith patients and their family caregivers. A single-group intervention study with a pretest–posttest design was conducted inthree regional hospitals that had a nurse-led HF clinic. Five RNs, eight patients, and eight family caregivers participated. ThreeFamHCs were conducted by telephone with each family every 2 weeks. Qualitative and quantitative data were collectedthrough semistructured interviews and questionnaires. FamHCs improved the nurse–family relationships and relationshipswithin the families and provided RNs with new knowledge about the families. FamHCs conducted by telephone wereconsidered to be feasible for both families and RNs, although RNs preferred fewer and shorter FamHCs. The RNs preferredmeeting face-to-face with the families as nonverbal communication between the family members could be missed because oflack of visual input. On the other hand, RNs appreciated to focus entirely on the conversation without the need to performillness-related routine checks. In conclusion, the advantages of FamHCs conducted by telephone outweighed the disadvantages.Visual contact, provided by video telephony, and a shorter version of the tested FamHC would facilitate the use in HFnursing care.

  • 4.
    Gusdal, Annelie K
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Josefsson, Karin
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Thors Adolfsson, Eva
    Vastmanlands Hosp Vasteras, Sweden.
    Martin, Lene
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Informal caregivers’ experiences and needs in caring for near ones with chronic heart failure in ordinary homes: An interview study.2014In: European Journal of Heart Failure / [ed] Prof. Marco Metra, 2014, Vol. 16 (2), p. 124-124Conference paper (Other academic)
  • 5.
    Gusdal, Annelie K
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Josefsson, Karin
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Thors Adolfsson, Eva
    Centre for Clinical Research, Uppsala University, County Council of Västmanland, Västerås, Sweden.
    Martin, Lene
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study2016In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, no 4, p. E1-E8, article id 25419945Article in journal (Refereed)
    Abstract [en]

    Background: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. Objective: The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. Methods: The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis. Results: Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals. Conclusions: Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative.

  • 6.
    Gusdal, Annelie K
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Josefsson, Karin
    Univ Borås, Fac Caring Sci Work Life & Social Welf, Borås, Sweden..
    Thors Adolfsson, Eva
    Cty Council Västmanland, Västmanlands Hosp Västerås, Primary Hlth Care, Västerås, Sweden..
    Martin, Lene
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Nurses’ Attitudes toward Family Importance in Heart Failure Care2017In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 16, no 3, p. 256-266Article in journal (Refereed)
    Abstract [en]

    Background: Support from the family positively affects self-management, patient outcomes and the incidence of hospitalizations among patients with heart failure (HF). To involve family members in HF care is thus valuable for the patients. Registered nurses (RNs) frequently meet family members to patients with HF and the quality of these encounters are likely to be influenced by the attitudes RNs hold toward families.

    Aims: To explore RNs' attitudes toward the importance of families' involvement in HF nursing care and to identify factors that predict the most supportive attitudes.

    Methods: Cross-sectional, multicentre web-survey study. A sample of 303 RNs from 47 hospitals and 30 primary health care centres (PHCC) completed the instrument Families’ Importance in Nursing Care - Nurses’ Attitudes.

    Results: Overall, RNs were supportive of families' involvement. Nonetheless, attitudes toward inviting families to actively take part in HF nursing care and involve families in planning of care were less supportive. Factors predicting the most supportive attitudes were to work in a PHCC, a HF clinic, a workplace with a general approach toward families, to have a postgraduate specialization, education in cardiac and or HF nursing care, and a competence to work with families.

    Conclusions: Experienced RNs in HF nursing care can be encouraged to mentor their younger and less experienced colleagues to strengthen their supportive attitudes toward families. RNs who have designated consultation time with patients and families, as in a nurse-led HF clinic, may have the most favourable condition for implementing a more supportive approach to families.

  • 7.
    Gusdal, Annelie K
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Josefsson, Karin
    Univ Borås, Fac Caring Sci Work Life & Social Welf, Borås, Sweden..
    Thors Adolfsson, Eva
    Cty Council Västmanland, Västmanlands Hosp Västerås, Primary Hlth Care, Västerås, Sweden.
    Martin, Lene
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Registered nurses' perceptions about the situation of family caregivers to patients with heart failure a focus group interview study2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 8, p. E1-E18Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes.

    AIMS: The aims of this study are to explore registered nurses' perceptions about the situation of family caregivers to patients with heart failure, and registered nurses' interventions, in order to improve family caregivers' situation.

    METHODS: The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis.

    RESULTS: Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area "Family caregivers' situation" includes two categories: "To be unburdened" and "To comprehend the heart failure condition and its consequences". The content area "Interventions to improve family caregivers' situation" includes two categories: "Individualized support and information" and "Bridging contact".

    CONCLUSIONS: Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it necessary to have a coordinated individual care plan as a basis for collaboration between the county council and the municipality.

  • 8.
    Gusdal, Annelie K
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Obua, Celestino
    Makerere University, Kampala, Uganda.
    Andualem, Tenaw
    Strengthening Pharmaceutical Systems, Management Sciences for Health, Addis Ababa, Ethiopia.
    Wahlström, Rolf
    Karolinska Institutet, Stockholm, Sweden.
    Chalker, John
    Centre for Pharmaceutical Management, Management Sciences for Health, Arlington, United States.
    Fochsen, Grethe
    Karolinska Institutet, Stockholm, Sweden.
    Peer counselors' role in supporting patients' adherence to ART in Ethiopia and Uganda2011In: AIDS Care, ISSN 0954-0121, E-ISSN 1360-0451, Vol. 23, no 6, p. 657-662, article id 21347887Article in journal (Refereed)
    Abstract [en]

    Our aim was to explore peer counselors' work and their role in supporting patients' adherence to antiretroviral treatment (ART) in resource-limited settings in Ethiopia and Uganda. Qualitative semi-structured interviews were conducted with 79 patients, 17 peer counselors, and 22 providers in ART facilities in urban and rural areas of Ethiopia and Uganda. Two main categories with related subcategories emerged from the analysis. The first main category, peer counselors as facilitators of adherence, describes how peer counselors played an important role by acting as role models, raising awareness, and being visible in the community. They were also recognized for being close to the patients while acting as a bridge to the health system. They provided patients with an opportunity to individually talk to someone who was also living with HIV, who had a positive and life-affirming attitude about their situation, and were willing to share personal stories of hope when educating and counseling theirpatients. The second main category, benefits and challenges of peer counseling, deals with how peer counselors found reward in helping others while at the same time acknowledging their limitations and need of support and remuneration. Their role and function were not clearly defined within the health system and they received negligible financial and organizational support. While peer counseling is acknowledged as an essential vehicle for treatment success in ART support in sub-Saharan Africa, a formal recognition and regulation of their role should be defined. The issue of strategies for disclosure to support adherence, while avoiding or reducing stigma, also requires specific attention. We argue that the development and implementation of support to peer counselors are crucial in existing and future ART programs, but more research is needed to further explore factors that are important to sustain and strengthen the work of peer counselors.

  • 9.
    Gusdal, Annelie K
    et al.
    Karolinska Institutet, Stockholm, Sweden .
    Obua, Celestino
    Makerere University Medical School, Kampala, Uganda.
    Andualem, Tenaw
    Management Sciences for Health, Addis Ababa, Ethiopia.
    Wahlström, Rolf
    Karolinska Institutet, Stockholm, Sweden.
    Tomson, Göran
    Karolinska Institutet, Stockholm, Sweden.
    Peterson, Stefan
    Karolinska Institutet, Stockholm, Sweden.
    Ekström, Anna-Mia
    Karolinska Institutet, Stockholm, Sweden.
    Thorson, Anna
    Karolinska Institutet, Stockholm, Sweden.
    Chalker, John
    Center for Pharmaceutical Management, Management Sciences for Health, Arlington, VA, United States.
    Fochsen, Grethe
    Karolinska Institutet, Stockholm, Sweden.
    Voices on adherence to ART in Ethiopia and Uganda: a matter of choice or simply not an option?2009In: AIDS Care, ISSN 0954-0121, E-ISSN 1360-0451, Vol. 21, no 11, p. 1381-1387, article id 20024714Article in journal (Refereed)
    Abstract [en]

    This paper explores HIV patients' adherence to antiretroviral treatment (ART) in resource-limited contexts in Uganda and Ethiopia, where ART is provided free of charge. Qualitative semi-structured interviews were conducted with 79 patients, 17 peer counselors, and 22 providers in ART facilities in urban and rural areas of Ethiopia and Uganda. Interviewees voiced their experiences of, and views on ART adherence both from an individual and a system level perspective. Two main themes emerged from the content analysis: "Patients' competing costs and systems' resource constraints'' and "Patients' trust in ART and quality of the patient-provider encounters.'' The first theme refers to how patients' adherence was challenged by difficulties in supporting themselves and their families, paying for transportation, for drug refill and follow-up as well as paying for registration fees, opportunistic infection treatment, and expensive referrals to other hospitals. The second theme describes factors that influenced patients' capacity to adhere: personal responsibility in treatment, trust in the effects of antiretroviral drugs, and trust in the quality of counseling. To grant patients a fair choice to successfully adhere to ART, transport costs to ART facilities need to be reduced. This implies providing patients with drugs for longer periods of time and arranging for better laboratory services, thus not necessitating frequent revisits. Services ought to be brought closer to patients and peripheral, community-based healthworkers used for drug distribution. There is a need for training providers and peer counselors, in communication skills and adherence counseling.

  • 10.
    Obua, Celestino
    et al.
    Makerere University, Kampala, Uganda.
    Gusdal, Annelie K
    Karolinska Institutet, Stockholm, Sweden .
    Waako, Paul
    Makerere University, Kampala, Uganda.
    Chalker, John
    Center for Pharmaceutical Management, Management Sciences for Health, Arlington, VA, United States.
    Tomson, Göran
    Karolinska Institutet, Stockholm, Sweden .
    Wahlström, Rolf
    Karolinska Institutet, Stockholm, Sweden .
    Multiple ART Programs Create a Dilemma for Providers to Monitor ARV Adherence in Uganda2011In: Open AIDS Journal, ISSN 1874-6136, Vol. 5, p. 17-24, article id 21629504Article in journal (Refereed)
    Abstract [en]

    Background: Increased availability and accessibility of antiretroviral therapy (ART) has improved the length and quality of life amongst people living with HIV/AIDS. This has changed the landscape for care from episodic to longterm care that requires more monitoring of adherence. This has led to increased demand on human resources, a major problem for most ART programs. This paper presents experiences and perspectives of providersin ART facilities, exploring the organizational factors affecting their capacity to monitor adherence to ARVs. Methods: From an earlier survey to test adherence indicators and rank facilities as good, medium or poor adherence performances, six facilities were randomly selected, two from each rank. Observations on facility set-up, provider-patient interactions and key informant interviews were carried out. The strengths, weaknesses, opportunities and threats identified by health workers as facilitators or barriers to their capacity to monitor adherence to ARVs were explored during group discussions. Results: Findings show that the performance levels of the facilities were characterized by four different organizational ARTprograms operating in Uganda, with apparent lack of integration and coordination at the facilities. Of the six facilities studied, the two highadherence performing facilities were Non-Governmental Organization (NGO) programs, while facilities with dual organizational programs(Governmental/NGO) performed poorly. Working conditions, record keeping and the duality of programs underscored the providers' capacity tomonitor adherence. Overall 70% of the observed provider-patient interactions were conducted in environments that ensured privacy of the patient. The mean performance for record keeping was 79% and 50% in the high and low performing facilities respectively. Providers often found it difficult to monitor adherence due to the conflicting demands from the different organizational ART programs. Conclusion: Organizational duality at facilities is a major factor in poor adherence monitoring. The different ART programs in Uganda need to be coordinated and integrated into a single well resourced program to improve ART services and adherence monitoring. The focus on long-term care of patients on ART requires that the limitations to providers' capacity for monitoring adherence become central during the planning and implementation of ART programs.

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